Frustration hit me for six today-WHY?

Hi all,

Been a while since I started a new discussion and I dont really understand why I feel particularly low today., though it did not get off to a very happy start.  Those who have followed other discussions will know that my Mum is in a care home due to general physical/mental frailty.  I popped in to see her for my usual Sunday visit and filled her in on family news as always.  Not much of a response until after about 20mins she just looked at me and said go home, you are not able to give me what I want  so there is no point  you being here. We have had this type of conversation before but somehow it knocked me for six.  Well I walked back home in the  beautiful sunshine feeling 'useless' (silly I know) and then hubbys opening words were,  she not in talkative mood then!  This comment coming from the man who constantly shutting me out of how he is feeling (he has incurable cancer) and during the past few days he has definitely struggling a little more with  cold/cough symptoms though my suggestion of getting checked out (before his next appointment later this month) gets a negative response.  I  am here for him but he is pushing me away and today I have just felt surplus to requirements because I cant help those who mean something to me. We are 15 months into his cancer journey and its hard enough knowing that this cannot be cured but somehow harder still that I feel like an imposter in my own home.  I have spent the day sitting reading in the garden (he has not ventured out of the arm chair other than to use the bathroom) and the only comment came when I pop indoors to get drinks;lunch;more drinks; dinner when he remarked that the neighbours cat had chosen to sit on my lap!!Think  the cat has picked up that I  needed the company.  Now I am indoors and he sleeps, Sorry for the ramble but needed to get my emotions down. Hoping to feel better tomorrow.  Jules

  • Max

    Nature is taking it course by giving you the chance to enjoy life (thats nature after all)  for as long as you can and why not. If it gives you a better quality of life, no matter how long, you will make the most of it by spending that time with the ones you love and who love you. You, nor they, would really want it any other way.   Dont you dare think about slipping away quietly, as you put it.  Theres that guilty word again. Like others have said to me (on here and my daughter too) no one chooses cancer (or any illness for that matter) and if the roles were reversed you would be doing the same as what your husband is doing - helping you fight. Its quite a frightening battle to be part off but with our forum buddies none of us are alone and that is why I hope we can keep others company during their journeys of the ups as well as the downs.  Woah - what a ramble that is - sorry. 

    Thanks again for those lovely words, its very humbling especially as in the real light of day I have lots to be thankful for (sometimes emotions get in the way of reality) having already had over 35 yrs of marriage. Imagine, we met on a blind date and my Mum said it would never last.

    Talking of the blackbirds, hubby is watching the grand prix practice and all of a sudden walked over to our window to chase of 'stalking cat' - not ours but one of several that wonder through our garden on a regular basis.  We both love cats (had one years ago) and know its only natural for them to go after the birds and I suppose I am tempting fate with so many feeders hanging around.  Have not tried the sultanas but the friend I go to bingo with buys grapes for the birds (hides them from her hubby as dont think he would be too amused at such extravagence).

    Max have a peaceful weekend  and relax in the knowledge that those you love want you around for a long time yet.  Chat soon.Jules

  • Hi Max,

    Hope you don't think I'm intruding re your posting to Jules. I am glad Jules has taken you to task regarding what you said about quietly slipping away. Don't you dare even think about it again please. My wife has a load of health problems (Plus having to put up with me and that takes some doing) which get her down and on a few occasions has said, I would be better off without her as she feels she restricts the things we used to enjoy doing together.  I have always said, If the boot were on the other foot she would do all she could for me and have had to remind her of the pledge we made when we got married 45 years ago, "Through sickness and in health".

    I agree wholeheartedly with your comments about Jules and that also applies to you too Max. We do have a lovely community of people on here with so many caring people.

    Do take care and have a relaxing weekend, best wishes to you and your family, Brian

  • Jules & Brian ....

    What sweeties you are and I know you are both right but I am sure we all have these feelings creeping in sometimes. Have had my Herceptin infusion today and just feeling a bit 'thingy'.

    No wonder your marriage has lasted 45yrs Brian - your wife is a lucky lady!   And had to smile Jules when you said your Mum had said 'it would never last!' - shows you that your parents dont always know best!!  Something our kids tell us often!

    Andy & I have been married 37yrs too - been together since teenagers. We have had our 'blips' like everyone after all those years but are still best mates and still talk lots (well I do anyway  - he just nods and grunts in the right places ha ha ha!). Sending you both a hug and speak soon. Max x

  • Max

    Love the 'thingy' word.  Of course we have those days - remember how this thread started and thats less than a week ago.  Sometimes its just difficult to keep that smiley feeling going on and thats why the forum is here. 'REASSURANCE' is the name of the game and we all seek confirmation that its okay to have blips. My daughter(half way through second pregnancy) and me (in the throws of the 'change') - are a hormone timebomb and I am not sure how much of my 'down' time is my moodswings kicking in (hubby never mentions them bless him) and how much is the lack of conversation. Needless to say my daughter probably had earache after an hour with me today but considering its her Dad with the Cancer she is an amazing support to me as is our son.

    Cant believe it, we have rain in Middlesex so my mower is still unused and I now have a lovely show of buttercups in the lawn - really should have done it during the week but was enjoying reading in the sun. Well have to hope it drys out tomorrow and then I will get it done.

    Can you believe it, I am now watching Pointless and talking to the TV!!!

    Take care  Jules x

  • Yep I can believe it - I love Pointless!  Take care x

  • Dear Jules, I'm really sorry to hear about everything that has happened to you. My father was diagnosed with stage 4 misothelioma a few months ago and has had three sessions of chemo. There has been a good effect but he has decided not to continue with chemo because of the horrible side effects and doctors say that continuing with chemo won't really be worth it. They said he is likely to live six months at least  but this could be much more because he appears healthy and well other than a bit tired  I find it so difficult to cope and don't understand the disease at all  did your husband have chemo? How many sessions and what effect did this have? Was it from asbestos poisoning and is there anything you can recommend to help at this stage? Please help juk or anyone who knows about mesothelioma   Thank you  

     

  • Hi

    Welcome to the forum though sad to read the reason behind your visit. My husband was almost 61 when he was given the diagnosis Mesothelioma.  His general health was good and his consultant recommended chemo to 'hold back' the cancer growth which he agreed to.  Like your Dad he only had three out of the prescribed six treatments as his medical team recommended he stop due to the side effects making him weaker than the illness at that time. We were never given a time line as it seems there is no set 'rule' with this disease and my husband's scans showed the limited chemo had slowed growth down which was a small bonus to him and the family. He was placed under the care of a palliative care team (hospital.gp and later community nurses) and even worked part time for a little while but the extreme tiredness took its toll and he stopped working.  His pain was monitored at three monthly appointments but never needed admission to hospital and survived for nearly three years after initial diagnosis. It is thought that his exposure to asbestos as a child (his father was in the building trade and made toys out of the stuff (obviously not aware of the dangers in those days) was the cause and he was entitled to an disability allowance which took away some of the financial pressures for him.

    The biggest help to my husband (and we had to be guided by his own feelings) was to be treated just the same as before (he hated the emotional fallout and chose me as a go between with our adult children as did not wish to talk about it). As the illness progressed he spent most of the time indoors watching tv as his breathing/tiredness restricted him (though he refused the aids offered to help). He was able to continue driving until a few weeks before he passed away and it was hard for him to eat very much in the  latter stages of his illness so was on presribed nutritional drinks.

    I am sure your Dad will be regularly monitored and if he, you or the family need support do speak to your own GP.  We were also put in touch with a charitable organisation called HASAG (they have a website) who helped us with the financial advice (the founders have first hand knowledge of Mesothelioma). There are a couple of different types of the disease and you will find some facts about Mesothelioma on the Cancer Research UK main site. 

    If you have any questions, I will be happy to try and help and if you are in the Uk you can also ring the nurses Mon to Fri 9-5 on the number given on this page who I know will be happy to try an answer queries.  Regards  Jules

  •  

    Thank you so much for sharing all of this. My father is also very private and has not told any of his friends or his brother or sister. Do you have any recommendations for how to encourage him to tell people? How did your husband cope with the diagnosis psychologically? My father is very depressed at the moment (quite understandably). My father has gone back to work part time as well, how long was your husband able to continue working? 

     

     

     

  • Hi

    My husband accepted his diagnosis quite well but did not like talking about it as it made him too emotional so I attended appointments with him and then updated our children, family and friends.  He preferred to keep things as normal as possible and this went well whilst he could work (he was an engineer and in the end was unable to continue as he troubleshooted around the world and it was too tiring).  He worked during his chemo treatment, just taking a few days off to recover and stopped work around a year after diagnosis. His pain relief was gradually increased and the fatigue meant he did not feel able to do anything much and once work was taken away from him he was pretty miserable. It was a very hard time for him and was pretty low in mood so had medication for this. We coped day to day and were guided  by his actions/needs and his medical team who were very supportive. 

    I came to the forum for support and it was invaluable as it gave me somewhere to offload so that I could do my best for him.

    I am sure your Dad will have his own way of wanting to deal with his diagnosis and maybe he will share this with you when he is ready.My husband's consultant was always encouraging  him to enjoy the quality of life he had whilst he was able to and we did out best to support him but on the whole he just wanted to be around his home and family so we managed this for him.  it was not easy for any of us but it must have been hardest of all for him.  Regards  Jules